2020-07-02T14:03:56-07:00 2019-12-31 262363334 PROPP CHRISTENSEN CANIGLIA LLP 9261 Sierra College Boulevard Roseville CA 95661 990 2019-01-01 205014628 MYOTONIC DYSTROPHY FOUNDATION INC MYOT 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 TANYA STEVENSON CEO 2020-07-02 true K JEFFREY DE LYSER CPA P00022269 9167512900 2019 2020-09-23 17:36:50Z X TANYA STEVENSON 2537355 false X WWW.MYOTONIC.ORG X 2006 CA To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. 7 7 5 180 0 2080997 1672633 68225 75663 8449 16560 25957 507010 2183628 2271866 386847 501662 0 741161 598551 0 301858 893668 1148071 2021676 2248284 161952 23582 3794207 3955407 471821 609043 3322386 3346364 To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. false false 963062 501662 Research - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease. 454226 75663 Education - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals. 353097 Advocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support. 1770385 true true false false false false false false false false false false false false false false false true false false false true false false true false false true false true false false false false false false false false true false false false false true true true false false true 25 0 false 5 true false true OC false false false false false 0 false false false false false false false X 7 7 false false false false false false false true true false false true true true true true true true true false CA X TANYA STEVENSON 4158007745 663 THIRTEENTH STREET SUITE 100 OAKLAND CA 94612 MOLLY WHITE CEO 60.00 0.00 X 224747 0 19299 LEAH HELLERSTEIN PROGRAM DIRECTOR 40.00 0.00 131178 0 10663 JEREMY KELLY Chairman 5.00 0.00 X X 0 0 0 MARTHA MONTAG BROWN VICE-CHAIRMAN 5.00 0.00 X X 0 0 0 ELIZABETH FLORENCE Secretary 5.00 0.00 X X 0 0 0 DAVID HERBERT Treasurer 5.00 0.00 X X 0 0 0 DAVID BERMAN Director 1.00 0.00 X 0 0 0 JOHN FITZPATRICK Director 1.00 0.00 X 0 0 0 JOEL REVILL Director 1.00 0.00 X 0 0 0 355925 29962 2 false true false 0 300263 1372370 96118 1672633 Conference Revenue 624100 75663 75663 75663 16560 16560 0 0 0 0 772499 300263 265489 507010 507010 0 0 0 2271866 75663 523570 X 171840 171840 0 329822 329822 0 244046 195237 14643 34166 0 282015 225610 16922 39483 0 21301 17041 1278 2982 51189 40952 3071 7166 0 16781 13236 2725 820 29147 22990 4733 1424 0 0 0 563306 444295 91481 27530 0 0 16245 12813 2638 794 0 52990 42428 3142 7420 0 0 324596 187876 14094 122626 0 0 0 6285 2871 924 2490 ADMINISTRATION 81852 37394 12031 32427 Printing and Publications 42903 19600 6306 16997 Postage and Shipping 13966 6380 2053 5533 0 2248284 1770385 176041 301858 28229 5251 1751342 2119320 992232 791519 0 0 0 0 0 21697 22192 0 1000707 1017125 0 0 0 0 3794207 3955407 112551 43272 359270 565771 471821 609043 X 2353564 2628944 968822 717420 3322386 3346364 3794207 3955407 23582 396 X false true X true false X 2113561 1551282 3016393 2080997 1671220 10433453 0 0 2113561 1551282 3016393 2080997 1671220 10433453 1039645 9393808 1425 1686 3092 8449 16560 31212 46667 12582 25957 507010 592216 0 11056881 409549 0.84960 0.98590 X 2113561 1551282 3016393 2080997 1671220 10433453 24525 35347 205789 68225 75663 409549 0 0 0 2138086 1586629 3222182 2149222 1746883 10843002 9760 16500 148428 111543 150957 437188 0 9760 16500 148428 111543 150957 437188 10405814 1425 1686 3092 8449 16560 31212 0 1425 1686 3092 8449 16560 31212 46667 12582 25957 507010 592216 0 2139511 1634982 3237856 2183628 2270453 11466430 0.90750 0.98640 0.00270 0.00170 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2042578 396 -495173 -494777 2537355 -265489 -265489 2271866 2772476 524192 524192 2248284 2248284 Part XII, Line 2d: Other expenses and losses per audited F/S AFFILIATE'S EXPENSES ON CONSOLIDATED F/S $761448 INTERCOMPANY ELIMINATIONS $-502745 SPECIAL EVENTS EXPENSES $265489 CANADA RESEARCH FELLOWSHIP 52500 WIRE TRANSFE SPAIN RESEARCH FELLOWSHIP 27500 WIRE TRANSFE UNITED KINGDOM GENE EDIT RESEARCH 249822 WIRE TRANSFE 3 false false false false false false Part II, Line 1 - Method of Accounting ACCRUAL METHOD OF ACCOUNTING false GALA 1072762 300263 772499 178299 87190 1072762 300263 772499 178299 87190 265489 507010 true SCRIPPS RESEARCH INSTITUTE 120 SCRIPPS WAY JUPITER FL 33458 330435954 52500 0 RESEARCH FELLOWSHIP UNIVERSITY OF FLORIDA PO BOX 100215 GAINESVILLE FL 32610 596002052 52500 0 RESEARCH FELLOWSHIP UNIVERSITY OF ROCHESTER 601 ELMWOOD AVENUE ROCHESTER NY 14642 160743209 62840 0 DM RESEARCH 0 3 Grantmaker's Description of How Grants are Used WHEN A GRANT IS AWARDED THERE ARE SUBSTANTIAL AND REGULAR INTERACTIONS BETWEEN GRANTEES AND THE MDF APPOINTED PROJECT ADVISORY COMMITTEE. THE ADVISORY COMMITTEE PROVIDES OVERSIGHT AND GUIDANCE OF FUNDED PROJECTS.WHEN A FELLOWSHIP IS AWARDED EACH RECIPIENT MUST SUBMIT TWO PROGRESS REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP. EACH RECIPIENT MUST ALSO SUBMIT EXPENSE REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP. false false false false false false false false false MOLLY WHITE CEO 224747 7800 11499 244046 X 15 96118 QUOTED FMV false false false Form 990, Part VI, Line 11b: Form 990 Review Process THE BOARD IS PROVIDED A COPY OF THE TAX RETURN FOR REVIEW PRIOR TO BEING FINALIZED. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts THE EXECUTIVE COMMITTEE MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY. THE EXECUTIVE COMMITTEE HAS A FORUM TO RAISE AND ADDRESS ANY POTENTIAL CONFLICTS OF INTEREST AND/OR ANSWER ANY QUESTIONS. MDF MAKES SURE ALL DECISIONS/ACTIONS ARE CLEAR OF CONFLICTS DURING THE WEEKLY CALLS. Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management AN INDEPENDENT EMPLOYMENT SEARCH FIRM IS USED ON A CONSULTING BASIS TO PERFORM A MARKET ANALYSIS OF SALARIES AND OTHER COMPENSATION.FOLLOWING THAT ANALYSIS, THE CEO SALARY IS REVIEWED AND APPROVED BY BOTH THE EXECUTIVE COMMITTEE AND THE FULL BOARD. Form 990, Part VI, Line 19: Other Organization Documents Publicly Available AVAILABLE UPON REQUEST. MYOTONIC UK 10 QUEEN STREET PLACE LONDON ECR UK 1BE QUALITY OF LIFE OF PEOPLE WITH MD UK MYOTONIC DYSTROPHY FOUNDATION INC true false false true false false false false false false false false false false false false false false false false MYOTONIC UK c 502745 COST